Entry #220 - December 19, 2022
Today is huCART day plus-six.
We are so grateful that Brady’s 103–105-degree temperature has finally broken and he has been fever-free all day.
But unfortunately, the neurological episodes that have replaced it are far worse than anything else we have experienced in this cancer journey thus far.
He is still classified in the mild range, since he can recognize us, and they come and go, but during these episodes, which have lasted anywhere from fifteen to forty-five minutes, he cries and screams uncontrollably.
Of all the things we have walked through, this just may be the hardest.
The hope, prayer, and expectation is that these symptoms will resolve themselves in the next seven to ten days.
Please pray that we witness an unbelievably fast recovery for this.
I’m not sure how much my heart can take.
In these moments I sit holding him, rubbing his head, and thinking, “What have we done? What in the world have we done?”
I keep pleading for peace to fall upon him and for his brain to be completely protected from this treatment.
We knew coming in that there was a neurological side to all of this. That is why they do MRIs and neuro assessments. That is why there is an ongoing study that we agreed to be a part of.
We knew of kids who have experienced long-term emotional changes following treatment.
But what do you do? Do you wait until the cancer kills your child, or do you risk a treatment that could cure the cancer but presents potential side effects?
Everything about this cancer journey for our child has been faced with those decisions. The first leg of treatment. The second, after he failed to get into remission. The total-body radiation he received. The bone marrow transplant. And now this.
It’s all hard. It’s all scary. It all feels impossible.
And all we can do is pray to find the peace in the right decision.
In these days, I question the choices we have made, but I have to remind myself that this was the path that felt right. This is the door we felt so strongly that God had opened for Brady. We didn’t make this decision on a whim or without praying through it. We felt this is where God was leading us.
So now, all we can do is the thing we have had to lean on since this cancer journey began eighteen months ago—trust.
Trust in that open door.
Trust where we felt that God was leading us.
Trust that Brady wins this battle.
The other night, Brady’s fever had soared to 105, and he was crying and completely out of sorts, sitting in his bed. I was holding him in my arms and trying to rock him while rubbing the side of his head, trying to get his body to settle.
I just kept praying and speaking over him. “Jesus, protect him. Lord, bring peace over his body right now. Bring peace. Please bring Your peace and protection.”
All at once, Brady’s body calmed. He melted into my arms, and his breathing relaxed.
Without even thinking about it, I looked to the right over my shoulder.
I think I honestly thought I was going to see Jesus standing there in that room.
We know He is with us. We know it.
Lord, protect our sweet boy. Help him weather this storm and come out perfectly healed on the other side. Let no part of his body be negatively affected through this treatment. Let only the cancer cells be destroyed. Wrap Your arms around him and protect his brain. Do what only You can do, Lord. Heal. Protect. Arm.
People often tell us, “You are so strong!”
But the truth is, I am weak. I am a mess. I am a puddle.
But Jesus, the rock on which we stand, He is strong. He is fierce. He is able.
Lord, You have armed us with strength for the battle. Our strength is found in You. Trusting You with it all.
I believe. You believe. We all believe.
Way to battle, Brady.
Shields up.
Swords out.
Deep in the trenches,
Kristin